Living with Chronic Fatigue Syndrome CFS/ME

I was diagnosed with Chronic Fatigue Syndrome in 2010 after I had been virtually housebound for nearly a year. At the time of diagnosis, and to this day, I felt like it was an unnecessary  and useless label. The diagnosis didn’t come with any kind of treatment plan, medication or even advice. It simply came with a “we don’t know much about it, but you’ll probably have this for life”. I was sent on my way believing that that was my lot. Thanks Doctor.

Chronic Fatigue Syndrome does more then it says on the tin – and that’s why many CFS suffers are fed up with this vague and dismissible name. CFS/ME is a complex chronic illness that manifests differently among it’s victims and involves not only debilitating fatigue, but also chronic pain, irritable bowel syndrome (IBS), brain fog, weight loss, fibromyalgia, headaches, nausea, insomnia, muscle weakness and more.  woman-506120_1920

The causes of Chronic Fatigue Syndrome are still debated, despite it being reported for more than 200 years. It’s likely that there are several triggers, and that a unique mix of factors trigger each individual’s illness.

In addition to viruses as the cause e.g. Epstein Barr, a recent review proposes a disruption of gut microbiota as a possible cause (Navaneetharaja et al. 2016). Our gut microbiome is so important for our long-term health this proposal doesn’t surprise me at all, and it fits with my experience. Because our gut microbes are so important, whether they are disrupted by a pathogenic virus, poor diet, stress or something else, the knock-on effects can be far reaching.  CFS has also been proposed as an autoimmune disease triggered by gut dysbiosis and disruption of the lining of the gastrointestinal tract (Navaneetharaja et al. 2016).

It’s easy to think that the virus that I caught in Costa Rica in 2009 was the culprit, as many studies show connections between CFS and various viruses, but in reality the virus I caught was the straw that broke the camel’s back. My CFS had been simmering away for a long time – I believe since my mid teens.

For me, I believe my immune system has been operating sub-optimally for a long time. I believe that my CFS is a result of gut dysbiosis and autoimmunity.  I know that when I look after my gut and acknowledge my diagnosed autoimmune disease (Hashimoto’s thyroiditis) my symptoms improve. It’s common to collect autoimmune diseases if you don’t catch them early and work at reducing inflammation.

For years I’d had periods of inexplicable exhaustion. As a child I’d happily curl up anywhere and go to sleep. In the summer holidays I remember systematically sleeping in until 11:30am and being shocked by how tired I was, but I simply couldn’t wake up earlier. I’ve never been sporty or energetic and I know I should be in bed at 9pm. I have been constantly cajoled, pestered and teased into doing things – going for walks, staying up late, going to the pub – when my body is crying out for sleep. At university, during my undergraduate, I had one day of SCUBA diving each week in the winter. I’d suffer severe headaches afterwards and I’d be exhausted the next day, barely able to walk to my lectures. In my early 20s I’d wonder if I’d be able to walk to and from town – just a 20 minute walk – but I was unsure of my strength. I remember catching a cold and being in bed for days, and then unable to walk faster than an 80yr old with a Zimmer frame. It was ridiculous and I remember marvelling at my lack of strength.  Each of these episodes passed and, once they had, I continued on with normal life – after all, all the doctors I saw told me I was normal.

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The final straw

I got seriously ill in 2009, at the end of my PhD. I’d had several quite stressful years during my PhD, but I’d loved my work and was passionate about producing high quality science. I’d worked hard in a very toxic system with no support. I had my ideas and data stolen, suffered abuse of power, manipulation and sexual harassment – things that are rife in academia. No-one had my back. I didn’t have an academic champion or mentor until it was far too late. This stress during my PhD was definitely a huge contributor to my poor health – and a big factor in distancing myself from academia. But it wasn’t the sole cause of my CFS. Many people unhelpfully told me I’d made myself ill by working too hard. While several studies link perfectionism and CFS (as reviewed by Kempke et al. 2015) this isn’t the full story.

What it CFS feels like

The fatigue is like no other. A total exhaustion that stops you from being able to lift your head off of the pillow, from moving your legs to get out of bed, from standing while the kettle boils or from being able to speak. It prevents you from functioning and makes you pause and question the necessity of every action. The brain fog that goes along with it is nothing short of terrifying. I could no longer rely on my brain. I couldn’t recall dates, times, facts or even names of close friends. I couldn’t problem solve. I couldn’t hold a conversation because I couldn’t follow it or remember what had been said or what I had already asked. It was humiliating and scary. I had terrible IBS and, despite eating three or more main meals in a day, I kept loosing weight. I ate and napped. That was it.

I went from being a competent, independent and reasonably intelligent woman to someone who couldn’t communicate with her friends, didn’t have the energy to read and couldn’t walk to the end of the road. I was by myself all day while my husband was at work. I was lonely and down. I needed to be cared for. I needed someone to shop, cook and clean for me, and my husband became my carer.

broccoli-952532__180Slowly I made myself better by focussing on me and allowing myself to put my health first. I took advice, I listened to my body and I learned to let go of anger. I changed my diet, even though my diet was healthy, and my approach to life. I radically reduced carbohydrates and I cut out gluten. I prioritised my sleep and I stopped using chemicals in my home and on my body.

It took time, but I returned to “normal” – at least I was no longer chronically fatigued and ill. I was different though, but in a good way.

I have to keep on top of it, especially since I also have Hashimoto’s thyroiditis, which shares many of the same symptoms as CFS. When I let my diet slip or if I pack too much in (which is a constant tendency),  I know I’ll pay the price.  It’s all about balance.

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Do you suffer from CFS or another debilitating illness? I’d love to hear your story.

I’ll be posting soon about the changes I made that helped me get my energy back, so FOLLOW my blog to make sure you don’t miss out.

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All the best,

Caroline

 

Chronic Fatigue- diagnosis to remission

Sometimes I can’t quite believe that I was pretty much housebound for 18 months in my twenties. Other times it seems all too close for comfort. The lack of recognition and respect Chronic Fatigue Syndrome patients receive still astounds me.

For me, like many, it was a long road to a very unsatisfactory diagnosis. For over a decade I told GPs that I was exhausted and not able to keep up with my peers. I told them I felt unwell and that I was worried. I told them I was not depressed. I told them that I was sleeping 12hours a day and was still exhausted. I told them I had to rest for days after exerting myself and that I lacked concentration and motivation. At each and every appointment I was told that my symptoms were vague and non-specific and therefore there was nothing to be done. I was told I needed to socialise less (at a point during my degree that I was a hermit), to get more sleep (more than 12hrs a day?) and that I was probably depressed (maybe, but chicken or egg?).

And so I lived in this state of exhaustion. I resigned myself to it. I thought it was just  the way I am. But I could never fathom how people could just get up and do things, how they could achieve so much. Where did they get the energy? Why couldn’t I do everything? Why wasn’t I “normal”?

Things came to a head when I was writing up my PhD thesis. I’d moved to Costa Rica to write up (well, why not!?) and, within a week of being there, I contracted a really bad stomach virus. I didn’t eat anything apart from watery rice for two weeks. I lost a lot of weight and I simply never recovered my energy.

I was extremely ill. I couldn’t shuffle across the apartment without stopping to rest. I couldn’t stand in the kitchen long enough to boil the kettle. I couldn’t hold my arms above my head for long enough to wash my hair. I had to have a nap after a conversation. I had irritable bowel syndrome. I ached all over – in both muscles and joints. I couldn’t concentrate for more than a nano-second and my memory was atrocious. I was constantly hungry and loosing weight rapidly. One day the world went black and I temporarily lost my vision.

I went from doctor to doctor and had test after test. I gave countless vials of blood and saw a seemingly infinite array of “specialists”, but none could offer me any viable explanation. All told me I was “normal”.

I soon learned that being “normal” in the medical world simply means that the test needed to detect what is wrong hasn’t been discovered yet.  Unfortunately, it seems that most doctors tend to listen more to the lab data than to their patients. Either that or they are unwilling to collaborate and problem-solve with the patient.

I wrote my PhD thesis and planned my wedding – I’m not sure whether this was tenacity or stubbornness, maybe a bit of both. I knew that, like most, my PhD was a huge stressor, and had been for sometime. I knew that I wouldn’t start to get better until I could put it behind me. My decision to persevere and finish my thesis was met with a lot of eyebrow raises and head shaking, but I knew having it hanging over me would be worse in the long run. That was my decision.

Back in Australia, newly married and with my doctorate (cum laude) secured, I was unable to leave the house. My GP finally stuck a label on what I had: Chronic Fatigue Syndrome. She told me there was no cure and that I would likely have it for the rest of my life – that there was nothing I could do.

For me, that meant no career, no kids, virtually no social life and that my new husband would be my carer. Clearly something had to change.

I read and researched CFS, and a friend recommended a local naturopathic doctor. Finally someone who listened to me, who didn’t tell me I was imagining my symptoms or that I was depressed. He is ordered tests and diagnosed me with dysbiosis and intestinal permeability – things that many doctors still deny the existence of despite a wealth of evidence. Together we looked at my diet and lifestyle and I began to make changes. It was slow, and it was hard, but I stuck at it. I designed my own diet, one that suited my needs and took my various nutrient deficiencies into account.

Slowly, I began to get better.

I also took a long hard look at my life, and where, and to whom, I was loosing energy. I realised I wasn’t good at looking after myself and I usually put myself last.

What’s most interesting is that my pre-CFS diet wasn’t “bad”. I’ve always eaten vegetables, nuts and pulses. I hardly ever ate fast or processed foods. I always cooked from scratch and kept myself hydrated. Clearly, a “normal” diet was not ideal for my body and was not going to promote healing and health.

I learned that doctors don’t always know best. That you are the expert of your experience and no-one should try to diminish it. Once you have found someone who will work with you, instead of dictating to you, you’re onto a good thing.

Had I not been told I was “normal” 10 years earlier, maybe the autoimmune storm that seems to be my body’s default status now wouldn’t be raging quite so hard.

After a post-doc in the USA, having a couple of kids and caring for my husband through cancer, I am now help others take control of their health as a Health and Nutrition Coach. I help people with chronic inflammation reduce and eliminate symptoms associated with thyroid disease, type 2 diabetes, inflammatory bowel disease, irritable bowel syndrome and CFS, and weight management through cancer. I always encourage people to discuss our work with their doctor. But it’s amazing how many doctors refuse to listen and instead belittle the huge steps these people are making in taking control of their health.C_14

10 things I learned from Chronic Fatigue Syndrome / ME

I was diagnosed with Chronic Fatigue Syndrome (CFS) or myalgic encephalomyelitis (ME) in 2010.  I had been struggling to function for nearly a year and been told repeatedly that nothing was wrong with me – all tests were normal. I got CFS as I was writing my doctorate thesis and after having a really bad stomach virus that my body simply couldn’t recover from.

I was bedridden and/or housebound on and off for about 18months. I had extreme fatigue, brain fog, headaches, fibromyalgia – muscle aches and pains. I was uncontrollably losing weight, despite a voracious appetite, and my digestive system was playing up. At one point I also lost my vision.

It was a really hard time, though in amongst it all I completed my doctorate (yep, with brain fog…) and got married (albeit in slow motion)!  Despite those achievements, I faced the terrifying possibility that I wouldn’t ever be able to work or to have a family – how could I have kids if my arms were too weak to hold them?

It was time to take control of my health. I slowly managed to get myself functioning again by making significant changes to my diet and lifestyle. I have to keep a close eye on my health, particularly in light of a new diagnosis, but I am now able to have a busy, full life and I have two kids (who I can hold, cuddle and run around with!).

Here are 10 things I learned from CFS

  1. We don’t have an infinite supply of energy – diagnosed as a twenty-something this was news to me! It shouldn’t have been – I had spent a lot of my life feeling exhausted, but I had never really acknowledged or accepted it. It wasn’t good enough to be tired all the time – “I shouldn’t need to rest”, “I should keep going”, “naps were a waste of time” etc. I inevitably would pour another coffee or eat something sugary to see me through, then crawl into bed at 9pm.
  2. Energy should be spent wisely – Once you realise you only have a certain amount of energy to spend in a day, and that that amount is somewhat limited, you have no time for people and things that waste it – and that’s ok.
  3. Who gives energy and who takes it away – I realised that I invested a lot of energy into people. When I had CFS those who contributed to my life in some positive way and those who drained my energy became strikingly apparent. This was a really important life lesson. I stopped following-up with the “takers” and I felt immediately better. This was a clear lesson in self preservation.
  4. I am an introvert – and proud! – Despite having a keen interest in psychology, I hadn’t previously dwelt on, or investigated, which area of the various personality continuums I fall into. A very good friend of mine recommended I read “The Introvert Advantage”, by Marti Olsen Laney. For me it was life changing! I strongly related to this description: “Introverts draw energy from their internal world of ideas, emotions and impressions – they are energy conservers”. I realised that I had been living under the guise of an extrovert – perhaps to “fit in” to the extrovert world of science (which is bizarre as many scientists are introverts!).
  5. Physical activity doesn’t have to be high energy – many people with CFS are told that exercise is good – and for some a staged exercise regime works well. For a many years before CFS I would push myself into going to the gym, to swim or go to aerobics classes. In all honesty I hate the gym. I find nothing pleasurable in going at all, and now that makes sense. I much prefer being physically active outside, surrounded by nature or by positive non-judgemental people – its energising. I also realised that I don’t need to keep up with other people’s expectations of what a healthy exercise regime should be – its unique to me.
  6. My biggest energy drains – small talk, rubbish television, sugar, caffeine, anxiety, anger and stress.
  7. My biggest energy sources – one to one conversations with interesting people, time alone being creative and thinking, taking the time to enjoy and savour a really good cup of tea (caffeine-free), yoga, warm and nourishing food.
  8. My body knows what it needs – I just have to listen. For a long time my body had been giving me signs that things were not going well, but I did not acknowledged them. Had I been more connected with they way my body felt, and had a higher respect for it, my dip into the world of CFS may not have been so dramatic.
  9. Epsom salt baths are amazing – I believe everyone can benefit from bathing in Epsom salts! It rebalances magnesium deficiencies, soothes aching muscles, helps with sleep and is thought to encourage the elimination of waste and toxins (sip water while you bathe).
  10. What matters in life – who and what deserves my precious energy. I decided that I deserved my energy – my health was worth fighting for, that I wanted kids and opportunities to live a full life. My kids and family are worth my energy and so are the unique and beautiful people that I am lucky enough to call friends.

This is my experience with Chronic Fatigue Syndrome and I believe it was directly related to my recent Hashimoto’s Thyroiditis diagnosis. Everyone’s is unique – from the triggers to the symptoms and the factors that help or hinder recovery.

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Do you have experience with CFS? Do you know someone with it or who has had it? What did your experience with CFS teach you?

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